Wow, I managed to find my thread again!
Humble apologies to anyone who has offered advice and I've ignored it - not intentionally, I assure you all.
Daughter is no better. The likely diagnosis is going to be given at her next appointment with the rheumatologist at the end of January, which is Fibromyalgia. This does seem to fit all her symptoms and everything else has been ruled out.
We did not realise how common this illness is, how difficult to diagnose, how much it goes undiagnosed and unreported, and how much pain and distress it causes to the sufferers and their families.
She has some okay days, some not bad days, some terrible days - and all without warning. She cannot pinpoint the "trigger" that many find prompts the onset of the illness. It will be lifelong and there is no cure. Treatment is hit and miss, trial and error. Her GP (and some of the consultants) seem open to agree to her trying anything that might help so she still has a few tests to undergo. Similarly with medication, none of which has helped so far.
Most of the time she is positive, hopeful, and planning ahead, helped by supportive family, a fantastic husband and two lovely children, but at other times she is in the depths of despair. Her life will never be the same now.
She is intent on trying to get back to work in the New Year, on greatly reduced hours. We aren't sure how this will pan out. She works for a major international company and before the illness was being put forward for promotion (again). On the one hand her boss insists that should still be in line for promotion but at the same time the Occupational Health team at work are telling her that from January she will have to sign a new contract that will reduce her income to about 25% of her current level, and promotion will never happen. i know that none of you can help with this, but there ARE higher level jobs she could do even on reduced hours, and we wonder what the law says about employment of disabled people (we are told the Fibro is a recognised disability now). She has 20 years experience with this company, has won awards galore with them, but despite her progress her salary isn't great, and 25% is definitely not enough to live on.
It must be very difficult for employers to have to "carry" disabled workers but the law is the law - not that we know what it says! Anybody any ideas on that, or who could advise her?
It isn't just the money (her husband will have to up his hours and volunteer for more overtime - and he will) but her self esteem. She is a worker by nature, all the family members are, and she thrives on work pressure and the success she achieves. We appreciate she will never reach the level she was previously aspiring to, but she wants to at least feel that she can contribute both to her family and the company.
Despite being disabled, she is determined not to be disabled, if that makes sense.
I don't think her symptoms are as severe as some people I have heard of with this illness, which is a relief for now, but do you think she is expecting too much, too soon?
Well, she has to face it, that is a fact. It breaks my heart, but other parents have faced worse for their children. We need to all be strong - and realistic - and count our blessings.
If anyone has any advice re help for fibromyalgia sufferers please let me know.
Also we know nothing about state benefits (seems you have to be dead these days to get anything!) so where does she go for advice on that?
Thanks everyone for listening. It really helps.
Meg